Barb1260 Posted April 8, 2019 Share Posted April 8, 2019 Woke up to my PET results in email this morning, before even speaking to the doc. Wasn't expecting NED because of the original size but to me they are good-at least I think so. Tumor original size was 6.9x6.2 cm, now 2.6x3. Original SUV 20, now 5.6. Lymphn node originally 3.5x2.8cm, now 1.2x1.7. SUV was 19.6 now 3.9. No other findings except new regions of airspace in lung apex, right upper lobe and right lower lobe-what does this mean? From the radiation? So what I get from this is it hasn't spread, it has shrunk and SUV is lower. Am I reading this right? So next step is either 2 blasts of chemo and/or Imfinzi. All weekend my neck has been swollen from the port catheter area going around my neck to the back above the collar bone. The PET said no enlarged lymph nodes there so that is a good thing. I noticed the swelling Thursday night, the PET was that morning so I am thinking it would have been seen. Onc's office said to call the surgeon who placed the port. Went to the surgeon's office, did an ultrasound, no blood clot and port looks perfect. So why the heck is my neck swollen. My ear and sinuses feel funny but I've never had swelling that low from that before. No pain, no tenderness, no fever. More radiation lingering side effects maybe? Somebody in my support group said their entire neck swelled after but I'm not so sure. There is always the good with the bad-can't I just celebrate without worrying about something, geez! All in all, a good day. LaurenH and Susan Cornett 2 Quote Link to comment Share on other sites More sharing options...
Rower Michelle Posted April 9, 2019 Share Posted April 9, 2019 So happy it was a good day! I think you’re right in that the chemo & radiation knocked it down quite a bit. What are your thoughts about immunotherapy? I understand the uncharted territory however I’ve now met a few people that are NED as a result. I saw my hippie doctor today & he said for those with a high PDL-1 expression, immunotherapy can be considered curative. The port thing sucks! I hope they get to the bottom of it. I wonder if there was a reaction to the PET contrast? Jersey Strong! Michelle Barb1260 1 Quote Link to comment Share on other sites More sharing options...
Barb1260 Posted April 9, 2019 Author Share Posted April 9, 2019 As far as immunotherapy, I’m all for anything that might work-I’ll try anything once. Didn’t have contrast for the PET, just the sugar drink and shot or is the shot contrast? The 2 main things I was concerned about-lymph nodes and blood clot are negative so I’m not going to stress. I’ll see the oncologist Thursday and take it from there. Hope you stay well Quote Link to comment Share on other sites More sharing options...
PaulaC Posted April 9, 2019 Share Posted April 9, 2019 It sounds like good news to me. I know it’s not easy but try not to worry. FYI I think the shot was the contrast. Barb1260 1 Quote Link to comment Share on other sites More sharing options...
Curt Posted April 9, 2019 Share Posted April 9, 2019 Sounds like good need to me. Barb1260 1 Quote Link to comment Share on other sites More sharing options...
Rower Michelle Posted April 9, 2019 Share Posted April 9, 2019 1 hour ago, PaulaC said: It sounds like good news to me. I know it’s not easy but try not to worry. FYI I think the shot was the contrast. Me too- whatever they put in your port makes me wonder if you had a mild allergic reaction. Let us now what the doc says! Quote Link to comment Share on other sites More sharing options...
LexieCat Posted April 9, 2019 Share Posted April 9, 2019 Awesome--sounds like you got a great response! What you're describing almost sounds to me like the crepitus I had after surgery. I did a quick search and found an article where doctors suspected that the patient's unexplained subcutaneous emphysema (another word for crepitus) was possibly caused by placement of the port. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5890461/ Note that it resolved on its own in a few days. Just a thought. The first thing I thought, when it developed, was that my glands were swollen--that's what I told the nurses. Hope they figure it out and that it's resolved soon. Barb1260 and BridgetO 2 Quote Link to comment Share on other sites More sharing options...
Barb1260 Posted April 9, 2019 Author Share Posted April 9, 2019 Wow-thanks Lexie. I will definitely read up on that and ask the doc. You are a fountain of knowledge. Have a great day Quote Link to comment Share on other sites More sharing options...
LexieCat Posted April 9, 2019 Share Posted April 9, 2019 That might also explain the "airspace" they were seeing. Just guessing here. Quote Link to comment Share on other sites More sharing options...
LexieCat Posted April 9, 2019 Share Posted April 9, 2019 And here's one more article describing a similar situation: https://www.cambridge.org/core/journals/european-journal-of-anaesthesiology/article/subcutaneous-emphysema-at-the-site-of-central-line-placement-due-to-the-haematogenous-spread-of-clostridium-septicum/947119826C002D62337FE1C32EE9B9E8 Quote Link to comment Share on other sites More sharing options...
Barb1260 Posted April 9, 2019 Author Share Posted April 9, 2019 Interesting, thanks!! Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted April 9, 2019 Share Posted April 9, 2019 Barb, My take: PET scan results are great, no GREAT! Everything is moving in the right direction. I agree with Lexie, the neck swelling is likely your body getting use to the port placement. The surgeon's diagnostics didn't reveal any problems so I'm hoping this symptom will resolve in time. I'm not sure what the finding "new regions of airspace in the lung apex" means but it doesn't mean a new metastasis. So I'd celebrate the wonderful results. Life always presents with good and bad; enjoy the former and ignore the latter. Stay the course. Tom Barb1260 1 Quote Link to comment Share on other sites More sharing options...
Barb1260 Posted April 9, 2019 Author Share Posted April 9, 2019 The port has been in since January. Wondering if it can still be the issue like you and Lexie have said. Thanks for your continued optimism. Quote Link to comment Share on other sites More sharing options...
Barb1260 Posted April 9, 2019 Author Share Posted April 9, 2019 LexieCat-interesting articles. Saved them to my phone to bring to the doc. Quote Link to comment Share on other sites More sharing options...
Barb1260 Posted April 13, 2019 Author Share Posted April 13, 2019 The oncologist was ecstatic with the PET results. Lot of inflammation from the radiation so she wants me to see the pulmonologist for a lung capacity test before starting the Imfinzi. Something about shortness of breath as a side effect. She’s being very cautious because of the newness of these drugs. So 2 more weeks before the next phase. The neck thing she thinks is unrelated. It’s telephone neck from going back to work-back to using my headset. Had this before but never strained the muscle so bad it swelled. Quote Link to comment Share on other sites More sharing options...
Rower Michelle Posted April 13, 2019 Share Posted April 13, 2019 Whoever thought the words ecstatic and oncologist would ever be used in the same sentence! Barb that is so awesome! Barb1260 1 Quote Link to comment Share on other sites More sharing options...
LexieCat Posted April 13, 2019 Share Posted April 13, 2019 Terrific, Barb! Fantastic news. So happy for you. Quote Link to comment Share on other sites More sharing options...
PaulaC Posted April 13, 2019 Share Posted April 13, 2019 That’s great news Barb! We’ve got this. 💪🏻 Quote Link to comment Share on other sites More sharing options...
Steff Posted April 17, 2019 Share Posted April 17, 2019 Happy to hear of your great news! Good work, Barb! Barb1260 1 Quote Link to comment Share on other sites More sharing options...
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